Archive for January, 2009

Or at least it was a holiday! We just got back from 4 days away. Actually ‘away’ was Grey Lynn but it felt like paradise that’s for sure! We had a great time and feel relaxed and refreshed.

Guess what? Asher is walking now too! He started taking steps over the weekend and is getting further each time. Except Asher is an excited wee man most of the time and laughs so much he falls over!! Aria is very encouraging of Ashers ‘no hands walking’ and gives him big claps!!

Aria is starting to string lots of words together. Her faves are “Aria stay up please” and “Aria walk please”. It is quite cute although it doesn’t always mean she gets what she wants! But still it is nice to hear her little voice. Asher is also starting to talk, his words being mum, NO! and bye. Cute.

I promise to not get all political on you! But we were sent this link about a story very close to our heart from a friend in the US. Thankfully this little girl, Emerson has already had her transplant but now needs further surgery but their health insurance is running out.

Healthcare in America is not run by the government. It is user pays, so if you don’t have insurance it makes things tricky indeed. The extent to my knowledge on this subject is really based on the Doco Sicko by Michael Moore. Hamish and I watched this at the movies while Aria was admitted a few years ago. Of course we went for educational purposes but both of us walked out in tears, stunned at what we saw and heard.

Anyway we are truly blessed to live in NZ and have the access to health care we do. Of course strangely this didn’t hit home until we had Asher- I know madness. I can take Asher to the doctor anytime and not pay a cent including medication! The week he had gastro I took him three times. Of course we are completely thankfully daily for the excellent care Aria gets, and of course we never have paid a cent. If she needs a test, she gets it, if she needs surgery she gets it! We have excellent and talented people taking care of her. No paperwork (not by us anyway, but I am sure there is heaps) or forms or phone calls to insurance companies. The public system isn’t without it flaws either, these are constantly in the media but I think public health is the best for the people.

But Aria is in a similar position to Emerson, both of them have their future in the hands of a bureaucrat. We will apply for funding for Aria transplant in the next few months. This is a big deal. We will always been sure that if God wants Aria to have this transplant the money will come. But we continue to be thankfully for the care she has received so far. And also wonder what what will happen to us in the US and if we will be able to afford health insurance, imagine having an accident and having to worry about how to pay for your cast or stitches! Still I will leave that issue with God who has supplied all our needs so far!

Aria has been taking steps now for awhile. It always needed lots of encouragement and would only be maybe 2-3 at a time. Until now!

The past 2-3 days Aria has decided, as Aria does, it is time to start walking. Finally! On Friday suddenly she was walking from our stairs to the table by the door, maybe a good 4 metres and back again. Saturday she was walking around Pak n Save and starting to ‘take off’ by herself without prompting. Today I was drying my hair and Aria just walks into the room! It was so strange to me to see her do that.

I think on Friday when I said she could walk around like mummy and daddy really hit home to her. She thought that was cool. And Hamish told her today she didn’t need to crawl anymore cause she can walk. That seems to click with her too. She is SUPER proud of herself.

It would be nice to know why it has taken Aria until she is two and a half to walk. There has never been anything wrong with her muscles or legs or brain. From the beginning of her life, being sliced open at 36 hours old, things haven’t gone well. But we are here now, walking and talking and she beat Asher to it as well. Although he isn’t far behind. It is looking likely I might have two children learning to walk at similar times! Still we are so happy to see Aria walking around unaided, it is pretty cool

Please register with THIS website and vote for the KIDS Foundation to win a $15,000 donation! It will only take a few moments of your time and you will also go into the draw to win a DVD Handycam.

Jodee sent me a link yesterday about a young man name Aaron. He has had a bowel transplant eight years ago and is doing well. Excellent news and very encouraging. Also Hamish sent me a link regarding stem cell research and discussed the idea of using the same technology to grow other organs including bowels. Technology too late for Aria most likely but encouraging for other kids in the future.

Anyway- it is nice to get rays of sunshine or rays of hope in your day when you least expect them.

Speaking of rays of sunshine. We were about to get into the car this morning when Aria ask me for a hat (patted her head) and then signed Hi-5 (her fave) to me. I asked if she wanted her Hi-5 hat and she said YES! Yup! Puzzled I asked if she was sure and if she wanted her My Little Pony cap. She said no. So I went upstairs and got her hat and when she saw it she said YAY! and put it on her head.

The Hi-5 hat is actually her winter wooly hat with a pom pom on top! It was super hilarious walking thru Manukau mall with a little girl wearing shorts and a t-shirt and a winter hat. Man, did I get some weird looks! She wore it the whole time and didn’t take it off until we got back into the car

More funny sayings from Aria this weekend. She is saying ‘Yay we are going up to Waipu’. We hit the road on friday night after hooking her up to TPN. Funny we drove past the off ramp to the Starship and we had to remind her we were going to Waipu for a holiday not to hospital. She was disappointed for a second and then was excited again. Aria decided that she was going to stay up for the for the whole trip to Waipu, which she did to our amazement. It was about a 2 hour car trip and she didn’t sleep a wink. We would ask her if she was going to sleep and she would say ‘No Aria UP!’ Funny girl

We had a great time with our friends Paul and Jean and Jean’s mum and their dog Peanut. The house is right by the beach so Hamish and Paul went for a swim and Jean and I stayed with the kids. We sat on the beach and Asher watched Hamish walk into the surf and as soon as Hamish touched the water he started to cry his little eyes out!! Asher isn’t much of a crier so we were quite surprised. He cried the whole time Hamish was in the water (which wasn’t very long because of the tears). Big fat tears rolled down his cheeks and he looked really upset. Poor Asher, I guess it must of been scary watching Daddy walk off into the big noisy surf.

We are home now and catching up on sleep and washing. But it was nice to get away for a bit.

Aria’s two favourite words at the moment. She is turning into a real jabber jaws, it is quite cute. But she doesn’t answer with a simple no these days is No Way! Which being two, most things you ask her to do gets the reply of No Way.

We had good news today. Aria’s Bili is 48! YAY! This is a liver function test and it is much improved. Normal is 20, and we are hoping for it to go back to and stay at 4. But will settle for 48. And no more tests until our regular monthly blood next month. I really feel like I am stepping into my friend Sam’s shoes right now, it is a bit weird. I have told Aria she shouldn’t be stealing Lara’s liver thunder, it’s not on

Hamish is doing Aria’s last dose of ABX tonight, awesome. Or YAY and Woohoo as Aria would say. Thankfully they are only every 8 hours so we are getting decent sleep but it would be one less job to do so that is great.

We went to Butterfly Creek today. Interesting, Aria hated the butterflys and told them to NO! Go Away! when they landed on her. But the tranchler spiders she loved! She blew them kisses and asked Aunty to take lots of pictures of them!! Strange, really strange.

Asher is doing well with his cast. He is learning to get around one armed. He isn’t walked yet and get a bit frustrated when he can’t crawl. Poor boy, hopefully it will be off soon!

This is how Aria is describing Asher currently, which is of course the truth

Yesterday afternoon Asher took a tumble off the couch and put his arms out to break his fall and now has a ‘buckle fracture’ in his wrist

Oh course I feel really stink about it cause we should of been watching him. Hamish and I were sitting on the floor by the couch and Asher was crawling around on it. Unfortunately we relaxed a bit and focused on something else. Asher had appeared to master getting on and off the couch but decided to go face forward.

Anyway hopefully it will only be on for 2 weeks, best case, worst case 4 weeks. Sigh. Thanks to Daddy who spent 4 hours in emergency and has taken him back just now. You’re a star!

The new year has started off very well although it is only 10 hours old as I write this. Still we are home so that is a good thing. Aria is in a great mood and happy as. Yesterday she was a bit flat and lay down all afternoon. I was a bit concerned but pinning my hopes on her cousins coming over to perk her up. Tivoli and Venisio came over and were their true energetic selves and Aria soon sat up and started playing and laughing! Phew!

This morning, to our huge relief, her output was bright green over night and is now coming out yellow! For days it has been almost clear which means the bile is absent from her outputs and building up in her skin and eyes making her yellow looking. We are hoping it starts flowing well and she goes back to her normal colour. She is also in a great mood and currently splashing in the bath!

We are doing very little this morning except hanging around the house enjoying being home. Hamish and I did heaps yesterday so today could be relaxing, still I have a pile of washing that needs hanging out. Ooops, well I will get to it, but in the meantime I am enjoying the company of my little family.

Thank you for your support and friendship in 2008. We appreciate every comment and kind gesture. Thank you so much, we look forward to you sharing 2009 with us and Aria.